Gail Sheehy: "My Toughest Emotion"
By Paula Spencer Scott, Caring.com senior editor
What emotion do you struggle with most as a caregiver? Guilt? Resentment? Fear? Gail Sheehy, the author of the new book Passages in Caregiving: Turning Chaos Into Confidence, who looked after her late husband, Clay Felker (founder of New York magazine) for the last 17 years of his life, didn’t hesitate when I asked her:
”Powerlessness.”
Really? Powerhouse journalist? Powerless?
“By the time you’re past 50, you’re pretty good at controlling your environment,” she said. You know how to manage your life, manage your time, manage your money, get what you need. “But when you become a caregiver, it’s like you’ve been dropped into a country without knowing the language or the currency – and they’re deciding your fate.”
That’s a helpless feeling caregivers of every stripe share, especially at first.
You can’t stop cancer (or dementia, or the ravages of stroke). You don’t know what’s coming ‘round the bend. Heck you don’t even know what the doctors are talking about half the time – and you suspect they sometimes aren’t too sure themselves.
Sheehy’s cure? “First I had to learn the language so I could become an outspoken advocate for my husband,” she says. “I learned not to take the rules as hard and fast. Then I could say things like, ‘No, I don’t think he’s ready to be discharged. I would like to speak to the hospital’s patient advocate.’ I could debate with the insurance company about what was medically necessary.”
Even though she’s a journalist trained to ask questions and get info, she says any caregiver can mobilize. Some of her recommended strategies: Contact a local Area Agency on Aging. Start a master notebook of phone numbers, test results, questions, answers. Consult siblings, look into consultants (she hired a geriatric care manager for advice), and talk, talk, talk.
For Sheehy and Felker, her tireless uphill battle against feeling powerless was effective. She became an ubercaregiver – advocate, problem solver, joy bringer, and yes, life extender. Those last years were very happy ones, she says.
Except for one thing. A different aspect of powerlessness still got to her -- one that threatened her own health and well being. Yes, even a smart, privileged, dedicated champion of caregiving can flub up her own self care.
Next week I’ll share more of our conversation about the parts of caregiving that this caregiving expert grappled with most.
This was a timely article by Gail Sheehy and I plan to find her book. "BMP" took the words right out of my mouth.
I want to second the point that you should contact a local area agency on aging, and also remember there is tons of information online but you have to be very careful on the source of information as reliable like the Mayo Clinic and the Visiting Nurse Service of New York (<a href="http://www.vnsny.org">http://www.vnsny.org</a>)
My Mom has always liked country music. I pop in a hank williams old cd and we do exercises to the music, plus she sings along. The music also brightens her spirits.
Dear Mich4567... To answer your first question, ...Can I ask your age and are you a female??? ...*No, I am a 52 year old straight man, twice divorced, taking care of my dad with Dementia, a pace maker and recent hip replacement surgery in his right hip...* ...and are on top of his issues. He feels good after a shower, as we all do... Plus a bit of exercise is good for his entire body. I make my Mom sit and then she does some leg exercises. She lift them up and down to knee height, then trys to hold them up for a bit. I need to keep her bones moving so she continues to maintain the strength in her legs. Being 80 is hard enough, yet having weak arms and legs. *that's great what you do for you 80 year old mother, the leg and hip exercises* I live in Nj and it is very hot to have her walk outside....even up and down the driveway with her walker. I make her walk through the house with her walker....and I have a tiny home...*what is the best way to persuade him to exercise? It's a constant problem to get him to exercise and walk* far as being lonely, I am an avid volunteer for the Elk's and the VFW. For the past seven months, ...Mom can be alone at home for a few hours...I am so grateful, for now, that I can leave her and not worry so much. I have a cell phone and she can call me anytime....plus i don't leave far from home. I have a Hugh circle of friends, but it is not the same as going out with them. *I can't leave my Dad alone for a few hours, he can't operate a cell phone, even the TV remote baffles him. He can't walk without a walker and has problems sometimes doing just that with balance* *I also have my own behavioral health issues and take meds and receive therapy twice a month at home. I have no friends who could watch my dad unless it was an absolute emergency* *I would not feel safe leaving him by him self. While I use my PC, I have a video camera so I can hear him sleep. Same at night, I can see him in bed and if calls me during the night, I can get to him quickly. I also have a portable video monitor, the same one I use for when I am on the PC, that has a pretty good range from the house. I used that when I shoveled snow outside for 4-5 hours* *Thank you for your response however, it would appear that you have more freedom allowing your mom to be left alone, and other than Sending him to Adult Health Canter on Tuesdays and Thursdays (9-3 PM each day) and when my sister gives me time on the weekend, It's mostly me 24/7* Nameste, Mc Huggs :)
Prayers LindaSue
My mother is 82 yo and is taking care of my 53 yo sister, who had a bilateral infarction of her memory center. I live in another state, and she lives in Texas. I can tell in my mother's voice that she is frustrated and somewhat resentful. Are there any support groups in San Antonio, that might help her?
Dear McHuggs.....Can I ask your age and are you a female??? I guess your a gal, because we are the caregivers in this world. You are doing good things ofr Dad and you are on top of his issues. He feels good after a shower, as we all do. Plus a bit of exercise is good for his entire body. I make my Mom sit and then she does some leg exercises. She lift them up and down to knee height, then trys to hold them up for a bit. I need to keep her bones moving so she continues to maintain the strength in her legs. Being 80 is hard enough, yet having weak arms and legs. I live in Nj and it is very hot to have her walk outside....even up and down the driveway with her walker. I make her walk through the house with her walker....and I have a tiny home. Af far as being lonely, I am an avid volunteer for the Elk's and the VFW. For the past seven months, I could not, but now I am getting back into some things since Mom can be alone at home for a few hours. I am so grateful, for now, that I can leave her and not worry so much. I have a cell phone and she can call me anytime....plus i don't leave far from home. I have a hugh circle of friends, but it is not the same as going out with them. But, they all understand that I have a commitment to my Mom. I have friends that offered to take my Mom to chemo or radiation, but I just felt guilty not taking her myself. She is my Mom....not theres. I do have one brother who lives right by the hospital in Pa., and I drove any hour each way for Mom's treatments. I am retired but my brother works and he puts his head in the sand. I am proud of taking care of Mom.....and God is happy with me too.
To mich4567: I just gave my dad a shower, and he had something to eat. He's watching ESPN News because he loves to watch sports on TV. The shower was the best time for me and I felt like I was giving something back to him to let him know how much I care for him. I imagine if I can keep him clean, especially his gluteus maximus and (private areas which was hard at first to get used to cleaning) and he sees a specialist this week; Now I can observe him with the mulit-video camera (which also has sound) so I can see him in his favorite chair. Later I will try to walk him and do some things to exercise his body. I read an article in today's local paper, concerning the elderly, those who have had cancer or even those who have it and going through chemo, exercise helps to slow down the process and helps to heal them. How do you deal with the loneliness of being the "care giver?" My circle of friends is very small and just includes family members. Ever since I became divorced in August 2007, (my mom passed away with cancer on January 3, 2007 at the hospital;) I have been a reclouse with people and trying to reach out. Now, as care giver, it's even harder and harder to deal with the loneliness. Nameste, Mc Huggs :)
We are displaying our emotions in all of the articles that we write. If you read deeper into our words, you will feel our emotions.
The original question was "What emotion do you struggle with most as a caregiver?" The article was on Gail Sheeney's book "Passages in Caregiving: Turning Chaos Into Confidence." It makes me wonder why we don't answer and address the emotion, why we don't want to turn the chaos into confidence or something other than victum. She even gave us some good tools to start to work with. I think that Gail has some great points and I look forward to the next interview by Paula.
I too, am a caregiver for my Mom. She was diagnosed in January of this year with base of the tongue cancer. My whole life for the past six months was caring for her. She had missed 1/3 of her treatments and she is 80 and could not breathe after all the radiation to her neck. We are getting another Pet Scan end of July to see if the cancer is cured. The throat doc finally scoped down her throat and saw nothing......so we are praying and praying. >I will say a silent prayer for your mom and you. Keep a good watch on her and have periodic checkups of her throat. My mom was "cancer free" for two month in 2006, through radiation and chemo-therapy then it came back and it came back very aggressively. So, keep a good watch on her throat... Now I can finally get my eyes checked, my mammogram, etc. She came first and now I can take care of me. Hopefully I did not put myself in danger of taking care of myself last. I was the soul caregiver and would just not want to leave her side. I had every emotion God created during this rough adventure. So, all of you, please pray for us. >I haven't done that for myself, my dad has always come first. My anxiety and panic attacks have increased along with my depressed mood. Most of the time it's overwhelming for me. What keeps me going is the thought, "...if I was not doing this he would be in a nursing home by now." These thoughts just create more pressure on me. My sister doesn't understand my depression or why I am on so many pills. Why I receive bi-monthly (wish it was weekly) therapy. She did relieve me for a few hours yesterday so I could lift weights at the new gym I joined, and comes to visit often as she can. >The past two weeks it was all him. First, it was a hemorrhage in his right eye, (all red); the doctor and an eye doctor cleared him and his eyes are fine. Then, it was his, "pain in the butt, LOL" No laughing matter but that what he was, "he had a pain in his butt!" So off to the doctor once more, he recommended a visit to the hospital's "Wound Clinic," and they found nothing however, they suggested seeing a specialist just to make sure. Which I have scheduled already for this Friday. Next, the cardiologist cleared him for his pacemaker, EKG, all is good, then, his feet, his toenails grow like weeds, I had to purchase special padding for the bottom of his feet to prevent further damage; Next, the BU Research Dept. wants to evaluate and needs "200 patients who have had recent hip surgeries," They plan to come in 2 weeks time to evaluate him for either A) a six month exercise program or B) a six month diet and nutrition program. To see how hip surgery patients deal with their research compared to a core group I believe. >Why does need 7-8 blankets to sleep in piping hot weather at night? No fan, no A/C? He has two A/C I had placed in his bedroom. (One was an older one I had placed in the wall many years ago; the other is newer (less than one year old) that my elderly 88 year old neighbor, framed and boxed in" for me, and we never use it?) >However, that's my dad, we love him and worry about what food he eats, or doesn't eat, any little pain he has, does he have regular bowel movements, his memory (he also has dementia I beleive resulted when he was under anesthesia while having the hip replacement surgery.) Hard to beleive my favorite time with him is giving him a shower in his new bathroom. Nameste, Mc Huggs :)
I was and still am the soul caregiver for Mom. I do have a brother, but it just seems like he buries his head in the sand. I am tired of asking for help, but he has plenty of time for vacations, etc. So, be it. Everyone has a choice to make when taking care of a sick parent. My choice.....and yours.....is to do the right thing. God bless you. You will never and should never hang your head for the great job you are doing. It is a tough, emotional and exhausting job. I am happy the God gave you and I the chance to do this challenge.
Thanks mich4567 your caring words mean a lot. I live with my Dad, he has dementia, a pacemaker and can't do anything without assistance, can't go to the bathroom, or even get up to make his own meals. I would never leave him alone except maybe to go outside for a short time. He does go to a Adult Day Health Center two days a week for a total of 12 hours, so I can do errands and get groceries. However, this weekend, I am feeling even m ore and more guilty. My sister and her family are going to a cook-out today and she does come by the weekends (we are trying to set a schedule for permanent days for myself so I can workout at the gym.) But the rest of the time I am here 24/7. We do watch the Red Sox games now and when the Boston Celtics are playing, most of the time he watches ESPN or NESN most of the time. He just never asks for anything except when I ask him if he is hungry...or I will just make him a meal and leave it on his table during lunch and dinner times.
My Mom is getting a bit out of her depression rut, since the doctors say her cancer might be gone. Mom is 80 and has always been depressed as far as I can remember. I am 55 and all my life I have been trying to make her be happy. All of the docs tell me that she is the one who has to pull herself out......not me or anyone else. She would just sit and stare and not want to even turn the TV on. It was difficult to even try to chat with her.....she just is not a talker. And she never wanted to be a part of anything I did....cooking, working in the garden, etc. She is on Xanax, Elavil an Lexapro and you think she would be on top of the happy world. There are just some people who just are depressed and because of her age and meds, they can't give her anything else. As far as taking care of your Dad, you are doing all you can for him. Did you try to get him to watch a movie with you???? I brought out some old photo albums (in my teens) and Mom enjoyed the pics. My Mom did not and still will not go outside for a walk. She really needs to get her legs moving so she can retain her muscle level. I have been in your shoes, but you need to have an escape for yourself. I could not leave my Mom alone for months. Since she had breathing attacks all the time, I was afraid to even go out and get the mail.
Prayers Mc Huggs
Guilt. Feeling I don't feel like the person who should be taking care of my dad, not because I don't want the job as care taker, but, I am depressed, have anxiety and panic attacks and ADD. My therapist visits me at our home because she knows I can't make it to their office. I have a video monitoring system I purchased to watch my dad from my bedroom at night and a portable one from my computer in the PC room. It's portable so I can see and hear him even outside. I tend to sleep more than I should, usually when I feel anxious and have to lie down but, I can still see him downstairs. I feel so guilty because I should be there for him however, he's hard-of-hearing (wears a hearing aide) and talking to him is challenging sometime. He doesn't like going outside except to doctor's appointments, I just can't understand why he doesn't want to go anywhere or sit and watch TV and read the newspaper. I am not the outgoing type either, I know if I wasn't here trying to take care of him, he would be in a nursing home and he deserves better than that, (nothing against nursing homes.) How do I stop feeling guilty that I am not doing enough for him?
That was a very hard part for me.....and still is. Everytime I thought things were going smooth and Mom and I could just get a thought of peace, something else would go wrong. It was either low blood counts, high potassium, heart rate irregular or something. The chemo and radiation just caused so many symptoms and unknown happenings. We have about a month to go on waiting for the Petscan to see if the cancer is gone. My Mom is 80 and I will never be ready to let her go. She is my best friend.
Being a caregiver to my dad with alzheimers has been hard for me emotionally. He was the best dad and when I see him and look into his eyes I can't help but wonder how much time I have left with my dad. He has had alzeihemers for 10 years or so and now he can barely say words. I don't want to let him go and I can't help but feel wanting to be with him all the time. Even though he is sick I remember when he was well I always felt safe with him and in a sense I still do. I guess I am just plain depressed and angry that he has this disease. He has several brothers and sisters but he is the only one that got this. I ask why him?
I brought my step-dad home from the hospital last night. For me being a caregiver can be an emotional roller coaster. One moment you may think that your family member is gone and the next everything is going fine. One moment there is peace and the next you worry when the phone rings if another crisis is pending. I think a person must realize that no matter what - you have to finally release them because of the natural way of life- we will all die. Emotionally you are wondering do I take this current situation seriously or is it minor? This kind of stress is the most difficult for me. Caregivers usually are caring for more than the sick but their own personal families- husband, children, etc. Exhaustion is near unless time is taken to recharge. Hopefully you can find it unless they're in the hospital and need constant attention.
She has lived it and is an Involuntary Expert, which is what I call myself. She also freely admits that she felt Powerless. I hadn't thought about it, but that's exactly how I felt, that I didn't have any choices because I was dealing with an incurable disease, Alzheimer's.
Hello and Thank You. Now it is the waiting for the Petscan results. I pray for the cure of her cancer. For now, we are not travelling everyday to Pennsylvania.....so we both have a nice break after working on our seven months of running ragid.
HI MIch, Hope you feel some exhilaration for awhile in taking care of your needs especially the health issues. Sounds like the treatment days for your Mom were rough. You have a great attitude that will serve you will I think. thanks for sharing, Workerpriest
I too, am a caregiver for my Mom. She was diagnosed in January of this year with base of the tongue cancer. My whole life for the past six months was caring for her. She had missed 1/3 of her treatments and she is 80 and could not breathe after all the radiation to her neck. We are getting another Petscan end of July to see if the cancer is cured. The throat doc finally scoped down her throat and saw nothing......so we are praying and praying. Now I can finally get my eyes checked, my mammogram, etc. She came first and now I can take care of me. Hopefully I did not put myself in danger of taking care of myself last. I was the soul caregiver and would just not want to leave her side. I had every emotion God creadted during this rough adventure. So, all of you, please pray for us.